Some years ago I was asked to use my 30 + years experience as a mainstream video director to transform a 40 page legal tenancy agreement into a “see and hear” version for supported living tenants. As a director understanding my audience and speaking their language has always been an imperative, some struggle with the notion that I make programmes for my audience and not for the client.
So realising I knew very little about this audience I worked with a group of about 10 supported living tenants every step of the way to benchmark my “visual language”. I quickly realised that having a learning disability had nothing to do with emotions or feelings, as these are human traits common to us all, my team of testers also had a wicked sense of humour. This marked a shift in my career away from corporate work to more rewarding pastures where my acquired skills could make a difference.
Being a tad dyslexic means I have a learning disability too so perhaps it was destiny that the inspiring Chris Brown, director of Grassroots Suicide Prevention saw my housing association work on Twitter and got in touch. There are two other people whose confidence in what a bloke with no medical or academic experience was trying to do for people with a learning disability, Glenys Marriot from Headway and a Mr Steve Hardy (whoever he is lol ) it was their validation of my efforts that gave me the all important confidence to stick at it.
Over a period of about a year Grassroots and I slowly gathered research as there is nothing out there except some very academic work that didn’t give me any personal insight. Some of our research was done quite formally via sessions run by Brighton and Hove based advocacy Speak Out and their LD clients.
I also spent that time talking to parents from around the world who so kindly shared the intimate and tragic details of their experiences with a stranger. It was emotionally the hardest research project I have ever taken on, but it gave me a much better feel for the breadth of the LD spectrum and how best to communicate this most difficult of topics.
It’s worth mentioning at this point that I have experienced what it is to have suicidal feelings as a troubled young man and since then the 3 suicides that have touched my life all involved people with learning disabilities.
As ideas and concepts were developed we were so lucky to have a team of people with learning disabilities who were prepared to get involved and give us their vital feedback, which now forms part of our evidence base. It’s a tragic fact that they all knew people who had attempted and sometimes succeeded in hurting themselves or ending their lives, so special thanks to them for their courage and commitment.
In total I spent 18 months creating testing and refining the content of the suicide prevention tool kit, getting the language and tone of voice right was a complex challenge and a labour of love. The LD spectrum as I learned is very broad so finding the “middle way” where I was not patronising to those on the higher functioning side while keeping it accessible for others was a real creative challenge, as was developing the character and the format.
The only way to know that your work works is to test it, so when we finally had a finished product we then ran a pilot for 6 months and as part of that sent copies to LD professors, LD clinicians, LD nurses, experts here and abroad as well as releasing copies to the LD community in Brighton and Hove for feedback.
The degree of approval and positive feedback received has exceeded anything we ever dared expect, all the respected names in this area have endorsed it, LD nurses let us run a tweetchat about it and now we have been invited to present it to an audience of LD clinicians at Kings College in October.
Having got clinical sign off from Brighton and Hove LD team and with 500 copies now out there in the community our vision is simple, it should be a tool available to the NHS, charities and carers nationally. So if might be ever so cheeky please contact Chris firstname.lastname@example.org at Grassroots for details of how you can access the tool kit, it’s waiting right now to help save the life of a person with learning disabilities.
We realised, well I did that if you were in Newcastle listening to a very “southern” voice it might lack the intimacy I believe is so important, also the local resources would differ so to that end I built a lot of flexibility in to the project, so without too much fuss or cost the voice and text can be changed into another local dialect or language if needs be. I feel it so important that the viewers feel that the toolkit is speaking to them.
No other project in my career, I am 61 now, has given me the opportunity to potentially save a life so it’s been hugely rewarding and I see it as my legacy project, giving something back to society and hopefully filling an important gap in the resources that are available to help carers and people with learning disabilities find their reasons for living and not hurting themselves. So big thanks to those who have so skilfully validated what I have been trying to achieve…you know who you are!